Summer loving

Summer loving

Thursday, January 21, 2010

Fundraising

I have missed a few days since I posted last. Do I have an excuse? Sure, I have 1000 of them, but so does everyone else. When I run, I actually blog in my head, and they turn out pretty good, but of course, by the time I get back from my run it is gone from my head. And I thought about recording it as I run, but that would take more energy and concentration than I have or could muster up.
So, I write down my thoughts in point form and hope that it all comes flooding back!

Ever since we received Maclain's diagnosis of CP, and my googling reached new levels, one of the key things that I have worried about, and have kept me awake at night is "where is all the money going to come from" to help.
Here is a rundown of our special costs of caring for Maclain to date.

Ability Camp x 2= over $11,000
CME therapy x 15 sessions = $1800
Bath Chair $1000
Special toys $1000
High Chairs and seating $1000
Shoes $400
Therapy Equipment $3000


Some of our future costs

Ability Camp- $5,300 per 5 week session as often as possible for best results
Therapeutic Riding-$35.00 per session, once per week
Seating System-$3,000
Stander-$2500.00
Communication Devices- $5,000
Conductive Education through March of Dimes $46.00 an hour
Walker $1000
....and so on and so on and so on

To quote the Barenaked Ladies " if I had a million dollars", this part of my stress would be a non-thing, but alas, my ship has not come in, or rather my lotto numbers have not come up.

Which bring me to the reason for my post. You know, pride is a funny thing, it causes war among men. And it makes it hard for proud, self sufficient, hard working parents, to accept help because that means that somehow we have failed, and we need to admit that we need help.

Some wonderful friends of ours, who didn't listen to our protests, thank god, put together a fantastic fundraiser in October called Raising the Roof for Big Mac. It was a tremendous effort from some incredible people, and we were fortunate to have raised enough money to come back to Ability Camp. To this day, my heart warms when I think of that awesome night.






Another fantastic act of charity that came our way, was as a result of someone who had heard about the event for Maclain. The dance troop that her daughter belongs to decide on a charity or fundraising drive for someone in the community at Christmas, and they chose to help Maclain. I don't think there was a dry eye in the house when I got up on stage to thank them for their generousity.

The only challenge with fundraising, is that typically it is not a one time gig, unless you have a specific goal in mind for a one time event.
For us to be able to help Maclain live an independent and functional life, we need to get help financially from other people because we simply cannot do it ourselves, and god knows the government does not help in any great way.

So as I think about the future and I research the next steps in his care and therapy, I have also come to think about planning another fundraiser. This time, I hope to be able to do alot of it on my own, so I don't have to burden other people who have busy lives themselves. I am also going to set up an area on my blog, where people may donate if they like, and I will keep a running tally of where the money is going, and how it is helping Maclain.
And in the meantime, stayed tuned, because the wheels are turning, and I hope to have another fundraiser come the spring or summer.

Sunday, January 10, 2010

Wow, your son is so well dressed and well cared for.

Someone actually said this to me one day not too long ago, after the woman asked how old he was and then made "the face". You know, the face that says " really, he is 2? And not walking, and not talking?" So as usual, I went on to explain that he has CP, and her response was the same as the title of this post.
Ok, lady, what would you expect? That because he is not "typical" that I would just leave him dirty and unkept? If anything, I go out of my way to ensure that Maclain is always well dressed and well groomed, as I did and do with Chase. Research actually says that people and kids with CP who present well and are well kept tend to be more respected, and better treated by society. That is not why I do it though, I do it because I LOVE MY KIDS, and I am proud of them, and I like them to look nice and I want them to learn to try and be presentable.
It just irked me that someone would make this comment.....if Mac was walking and talking and had a face full of chocolate and ripped and dirty pants, with disheveled hair, nothing would be said except maybe something like..."oh, how cute, boys will be boys".


So that leads me to the second part of my post.
I have had the privilege to meet a wonderful woman by the name of Dana Florence. She is the mom to triplets, all of whom have CP. Yep, you read that right, they all have CP, and the two boys have auditory neuropathy just like Maclain. Their names are Taylor, Cole, and Brody and they were born at just over 25 weeks gestation, and they turned 2 on January 1st. These kids are beautiful and loved, so loved and their mom is truly incredible. There are so many days when I feel sorry for myself, and as most people know, I have my issues with depression. I say the same old line " why me" and to this day I have never received an answer to this question. But then I meet this woman, and I think holy crap. Really, that is what goes through my head. How does she do it? And she doesn't just "get by". She goes above and beyond to make sure that her kids will have every chance in life. Another mom here at camp asked her how she can be so happy all the time, and Dana replied " what other choice do I have? If I don't have hope, what else is there"? It really helped me to put some of my own issues in perspective. And I know I said they are loved, but it's not just that, they are all so happy, and the look that she has in her eyes when she is with them.....sigh....if you could harness that look and bottle it and sell it, I swear it would bring world peace. I pride myself on how much I do for Maclain and how hard I work to bring him every opportunity to have a wonderful life despite his challenges, and here is a woman who is doing the same, but times 3. Can you even imagine?
Oh, and top of that, she has started a foundation to raise money for stem cell research to find a "cure" for CP. Like having triplets alone isn't enough, not to mention triplets with CP, but then she starts a foundation to help OTHERS!
Her website is http://threetobe.org/

THREE TO BE is a foundation working in partnership with The Hospital for Sick Children & Bloorview Kids Rehab, to support the development of new treatments and therapies for children’s neurological disorders. There are presently no foundations or agencies in Canada aimed at funding research and therapy for this broad spectrum of disorders, which range from Cerebral Palsy to Epilepsy to Autism. THREE TO BE stands ready to fill that gap. We are passionate about developing the organization to advance these fields of research, and to make a difference in the lives of many children living with neurological disorders

Check it out. They are having a fundraiser in May, and I know I will be there for sure.

I think sometimes that God gave me Maclain so that I would meet other incredible people whose aquantaince brings me inspiration.

Thursday, January 7, 2010

Home Sweet Milford

So, we are back at camp again for 5 weeks. I have been both dreading and looking forward to this moment since our last day of camp in June.
Given my state of phyisical and emotional fatigue, this post will be both a rant and a happy post all mixed into one.

Being at Ability Camp is the hardest thing I have ever had to do in my life. It is not the physical part, but how it affects my emotional state. It is a slap of reality when we walk through these doors. Don't get me wrong, I am extremely grateful that we are here, that we have this opportunity again, but it is so hard to believe some days that my little guy needs all this help. For someone who rarely cries, he spends a good part of his morning and early afternoon in tears. But you know what? While it breaks my heart that he has to work so hard, it puts a huge smile on my face when I see what he can accomplish. Even from the last time we were here, he has improved so much. It is so hard to make sure I cover off on all of the things I need to do for him on a daily basis from a therapy perspective, but conductive education helps to roll everything together. In our 5 hours of classroom a day we cover eating, potty training, standing, sitting, singing, speech therapy, socialization, walking, stretching etc. I feel like even though I am not sitting in front of him working on his hearing and speech, he is getting so much through what we do all day. It helps ease some of the burden of worry that I am not doing enough for him. Do you know how good it feels to have him poop on the potty twice this week already? When he does something like that, it almost feels "normal" and we can just relish in his accomplishment.
These kids and parents work so hard, and I know that the rewards for this hard work will be there when it is all said and done. I just wish that we had the resources to do this therapy all day everyday. It is so frustrating that the people in the UK and Japan and countries like that have realized the tremendous value that conductive education can offer to our disabled kids. But our fine country doesn't believe in the benefits, and therefore there is no government funding or even insurance coverage for such a wonderful program.
Ok, I could write about this all day, but the bottom line is I am thankful we are here, I can't wait to see what these 5 weeks brings us, and the weather has been good enough for me to squeeze in a few 5km runs. So in this moment, in a place called Milford, all is right with the world.





http://www.abilitycamp.com/